The treatment of Spina Bifida and Hydrocephalus in children and adults has improved during the past ten years, mostly through multidisciplinary care. All the resources within the IF network have been brought together to improve the quality of life of people with Spina Bifida and/or Hydrocephalus. Thanks to this, more and more of them are now going on to study, work, have children of their own and reach old age. Unfortunately, a blotch is appearing on the landscape of this continuing success story. Medical advances in prenatal diagnoses now give us unprecedented insights into the development of a foetus and these can sometimes fuel misplaced assumptions about the quality of a life that’s perceived as less than perfect. At IF we believe that the facts must be evaluated ethically. That’s why we have taken the lead in this moral debate and why we defend both the right to life and the right to receive all available treatment to improve the quality of that life. By becoming an expert on most relevant issues, IF has substantially increased its influence in this international debate and now cooperates with partners all over the world to defend the rights of people with impairments. In its efforts to establish equal opportunities for people with Spina Bifida and Hydrocephalus and combat discrimination at all levels of society, IF maintains a strong focus on two main ethical areas:
Human rights and inclusion of people with Spina Bifida and/or Hydrocephalus;
The rights of children with Spina Bifida and/or Hydrocephalus in developing countries.
In many countries most unborn children with Hydrocephalus and/or Spina Bifida are detected during pregnancy by an ultrasound scan. Some people openly state that people with a disability should not exist and that the "problem" can be solved by termination of pregnancy. During the past seven years IF has been studying this matter in close consultation with members and assisted by prominent experts. This started an internal debate. Even now the medical world still speaks about Spina Bifida and Hydrocephalus in terms of ‘"useless existence" and "lifelong unbearable pain," and "treatment would even be unwanted and dangerous." IF widened its own discussion to include all disabilities. IF supports this because unborn children with other disabilities - for example Down Syndrome and Cleft palate - are also detected during pregnancy and the medical profession also proposes termination of pregnancy in these cases. If parents do not seek out more correct information themselves, most (90%) of them follow the doctor's advice. This is not necessarily a free choice because - if an impairment is detected - termination of pregnancy is often offered as a standard procedure. Parents are intimidated by the negative prognosis where the life of people with impairments is reduced to its medical limits.
Experience shows that when future parents get non-judgmental counselling with access to the full range of issues relating to Spina Bifida and Hydrocephalus, most are willing to fight for a optimal quality of life for their child. Two examples: in the United States some parents try to improve the medical outcome of their unborn child with Spina Bifida by foetal surgery in the womb. In Queensland correct counselling, including correct and balanced information, proves that the majority of the parents choose to continue the pregnancy. In more and more countries abortion is legally and socially acceptable, and in many countries there is no time limit on legal abortion when the unborn child has an impairment. Recently in the Netherlands in the case of Molenaars and last year Perruche in France, Court decisions allowed "wrongful life" claims, compensation being given to the person with a disability because he lives.
The right not to live has been accepted but the right to live seems to be non-existent for the unborn child with a disability. The foetus has no legal status. Consideration should be given to provide protection for the unborn child under the UN Standard Rules, and the convention of the right of the child. Compensation awards in recent "wrongful life" claims make gynaecologists unsure and overactive in tests for prenatal diagnosis to detect all disabilities and propose abortion. IF has major objections to this development and made Press Statements calling on politicians to amend legislation. IF promotes correct imaging of disability in the media on national and international levels. At the 12th International Conference for Spina Bifida and Hydrocephalus of IF in Toulouse in 2000 a resolution emphasised the right to live of people with Spina Bifida and/or Hydrocephalus.
In 2002 the resolution was completed with the following call for action by IF members:
- Create and promote an International Knowledge Centre to provide access to the full range of issues related to Spina Bifida and Hydrocephalus.
- Promote research into the causes of Neural Tube Defects and in particular the role folate plays.
- Monitor the message promoted in prevention campaigns to safeguard the dignity of people with a disability.
- Promote awareness of the effects of discriminatory practices both in the language used by professionals and the practice of administering medical insurance.
- Organise awareness raising activities so that more people are aware of Spina Bifida and Hydrocephalus.
Based on the resolution ‘the right to be different' IF worked together with the Human Right Committee of the European Disability forum (EDF) on a European resolution on Prenatal Diagnosis and Termination of Pregnancy for all Disabilities. This resolution was unanimously accepted at the EDF General Meeting in Athens in 2003. The IF resolution was presented and accepted at the General Meeting of the American Association for Spina Bifida. IF is preparing a statement on late termination on pregnancy directed at the UN. IF expects that in this specific discussion the new European Member States will have a strong impact because of their religious backgrounds, and should therefore be actively involved.
Termination of life - Groningen Protocol
In 2005 the Dutch Groningen Protocol was published in the New England Journal of Medicine giving Dutch doctors the possibility to actively end the life of a newborn child with a 'severe' impairment. The protocol is based on 22 cases all concerning Spina Bifida. BOSK, IF's Dutch member organisation, wrote a letter to the Dutch government opposing against the Groningen Protocol and the proposal to institute a specific committee to judge if doctors handled carefully. To read the English translation of this letter, click here. IF also wrote a resolution on Active Termination of Life of Newborn Children with Spina Bifida and/or Hydrocephalus and the Right to Live. This document was unanimously adopted by IF's Annual General Meeting on 30 June 2006 in Helsinki. At the same time, IF took the lead in drafting an EDF resolution on this matter concerning newborn children with all sort of disabilities. The EDF resolution on Active Termination of Life of Infants with Impairments and the Right to Live was adopted by the EDF Annual General Assembly in May 2006.
The right to live is also specifically stated in the UN Convention on People with Disabilities which was adopted in December 2006. In 2009 public interest lawyer James E. Wilkinson spent his summer working as an IF volunteer, researching international human rights arguments against euthanasia of children born with severe disabilities. The IF Position Paper on the Groningen Protocol examines the key factor for the Protocol and similar decision-making, the anticipated “quality of life” for an infant with impairments. The paper concludes that practices, like the Groningen Protocol, that counsel parents that it is best for babies to die because they have severe impairments, violate international human rights standards. In January 2010 Dutch paediatricians suggested to extend the Groningen Protocol with the criterion "future unbearable suffering". They claim that newborns are now dying of starvation, because doctors fear prosecution when they end the life of a newborn with severe disabilities who is not suffering at birth, but will be in the near future. Both BOSK and IF both responded with press releases. Read the article that was published in the Belgium weekly Tertio.